Exploring Resilience via Lifes Burning Issues

Tag: reflection (Page 11 of 23)

Things I’m learning about grief

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After performing the saddest duty of life at Samuel’s funeral life continues… but it is not, and can never be the same.Today marks four months since Samuel died, and I’m learning new things everyday about the impact of his death.  Losing a child has a profound impact.

Many families experience this pain, and there are a few families I know learning the lessons of grief too. A consequence of having a child as special as Samuel is that you get to meet and know a lot of other families with really special kids and this year our network has experienced the loss of a few of these amazing little people, and a few more are struggling with declining health.

I am learning the hard lessons about grief, I am sure there is a lot more to learn, but this is still a new way of life…  so what have I learned so far?

There is no preparation

I am no stranger to death, I have witnessed it many times in my career. However, no matter how prepared you think you are intellectually for the death of those close to you, you can never be fully prepared emotionally for the loss and grief.

Through all of the challenges that Samuel faced, and all the times that we were “prepared” for the fact that he was going to die, there is nothing…absolutely nothing that can prepare you for that moment.

There is nothing that can prepare you for the sheer flood of emotions then, and in the days, weeks and months that follow.

Grief triggers are EVERYWHERE

Yes there are all the “expected” things that you know are going to remind you. I expect to have feelings around photo’s of Samuel, around places that were important in our time with him.

But the reality is that triggers are all over the place, and they can lead to sudden outbursts of emotion, and they happen in places and at times that you least expect them to happen.

I was reading a book that included the detail of some psychology experiments that involved people washing and the impact the act of washing had on thought processes around a separate task… and before I knew it my mind had jumped to pictures of me washing Samuel for the last time before he died, and washing him after he died… both beautiful memories…. but memories that had me sitting in my office in a flood of tears, overwhelmed by a deep feeling of loss.

This reaction has been triggered by songs, by other images, by conversations… by many things.

The pain of a loss is a reflection of love

The words of poet Mark Doty are a beautiful explanation …

grief might be, in some ways, the long aftermath of love, the internal work of knowing, holding, more fully valuing what we have lost. 

You can never regret having loved someone with all your heart, and grief is teaching me just how much love I had and continue to have for Samuel, and it is certainly teaching more and more about Samuel’s impact on my life.

You grieve your past, present and future with them

Some of the grief around Samuel has been with us for a long time, we had to grieve for the little boy he was before his accident, we still grieve for that version of Samuel.

Then there was the “little stream of losses” along the way as Samuel deteriorated and was no longer able to do certain things. 

There’s the now of grieving for him. Missing him, noticing the differences that life holds without him.

There’s the future of grieving from him…. thinking of all those things that he will never be a part of in our futures.

It is messy and it is confusing.

Most people have probably heard about the “stages of grieving” by Kubler-Ross… it’s a useful theoretical model for having an intellectual understanding of grief…. but like my experience of many other models for life “knowing” something does not prepare you for it……. and when it happens it’s not that clear cut…. it’s not stage 1 followed by stage 2 etc etc…. some days it’s every stage all at once, sometimes it’s 5 followed by one followed by 3….. there is no such thing as a linear process of grief it is messy and it is confusing.

Then there is the anxiety that comes with grieving which is not something that the “models of grieving” discuss or have you expect…..the heart palpitations, shortness of breath and other anxiety symptoms that spring out of nowhere as part of the experience of grief.

You cannot compare grief and loss

With the best of intention people will try….. yes, there might be some similarity in the events, and there is certainly the shared experience of broken hearts and loss….. but each and every experience is different.

They didn’t lose Samuel… they didn’t have the relationship with him that is unique to me, the relationship that is unique to Jo-ann, or the relationship that is unique to Tanja or Taylor.

Grief is a unique and individual experience… I can’t compare my experience of it with my own wife’s experience due to the differences in the relationship between a mum and a dad and their child, we are all grieving but by necessity have to do it in our own way that honours our unique experience and relationship with Samuel

So there is no way I could even begin to comprehend other families grief and loss… I can sympathise with the sense of loss and the broken heart but I will never know what it feels like to have lost their unique child… and they will never know what it is like to have lost Samuel.

There are days when you will feel totally and completely alone

It doesn’t matter how many people are around, how supportive people are, and even in the midst of family…. the sensation of being completely and utterly alone can hit.. and nothing can shift it.

Time does NOT and cannot heal this wound……

The Rev Graham Long from the wayside chapel put it beautifully in a remembrance ceremony held by Bear Cottage. to paraphrase him

 Time does not heal the wound of losing a child, and nor would we want it too. To heal the wound would be in some way a signal that we have forgotten them, and we never want to forget them. In time scar tissue forms on the heart.. and that scar on our hearts is a reminder that they lived, a scar we WANT to carry with us because of everything it reminds us of.

I miss my little man every single day, with every fibre of my heart. Life does go on, it’s not the same, and it never can be…. I will always love him, and carry him in my heart…. and continue to learn to how to grieve for him.

When your world shrinks….

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Back to Bear Cottage…

After all the difficulties with Samuel he has been home for two weeks. Samuel and Jo-ann have returned to Bear Cottage… but that is not a worry or cause for concern.. it’s planned…. Jo-ann will be a little spoiled as Bear Cottage holds their mother’s day camp” giving some pampering to her and some other extremely deserving mums.

The return to Bear Cottage will actually act a bit of a circuit breaker for all of us.

Jo-ann gets pampered, Samuel gets some more care and attention from the lovely staff (and we get a bit of a progress check about Samuel from the staff, they are more likely to see any significant changes in Samuel, having had a couple of weeks break since they last saw him).

The girls are at home with me…  back to school for them both and a bit of pressure off for them around home too.

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What has happened with Samuel at home?

Not all smooth sailing and things still don’t go as expected.

Some days have been horrendous, where it has been almost impossible to keep him comfortable no matter what drugs we are able to give him and other days he has simply slept his way through the day without a noise.

A worrying development was having Taylor home from school, completely wiped out by a bad head cold… which spread to Tanja and then having both girls home from school. It was inevitable that Samuel would come down with it.

Samuel’s secretions started to thicken up and go a bit off colour, he has needed a lot of suctioning and all of this started to trigger a large dose of worry for Jo-ann and I.. what would it mean for him?

We don’t really know. He continues to do weird things.. one minute his skin feels like it is burning,the next it feels like an ice-cube, but his core temperature has been fine. One minute he is breathing comfortably, the next he is breathing fast and hard.. but his lungs have still sounded mostly clear.

Reflecting on a shrinking world…

The last few days have provided an opportunity to think about what has happened. I realised that what has happened, for me at least, is that my world has shrunk…

Sometimes it is absolutely necessary for your world to shrink and  to become extremely task focused, because what is in front of you is an emergency (even though that “task” can be huge and have lots of active parts and layers to it that all need attention, and are all priorities that must be juggled … like managing a large fire 😉  )

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When managing a large fire, I don’t concern myself with what paperwork is still sitting on my office desk waiting for some attention…but what needs to be done here and now to have the best possible impact on the situation.

However, being back at work for a few shifts, and attending to a few things at work that would not normally be part of my responsibilities really drew my attention to the fact that my focus has been really narrowed (and rightfully so) for months now, including my focus at work..  all essentially since Samuel went to hospital at christmas time.

Seeing the contrast

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Noticing that my world has shrunk really highlighted the contrast to even the relatively recent past.

Dealing with Samuel and all his problems has been a constant for just over seven years.. sometimes needing periods of intense focus on only him but it has been seven years during which there has been a lot going on and I have done many, many things… but when I really stopped and took notice the contrast between last year and this year was significant.

Last year my world was continuing to expand, there were significant things happening that were growing my circle of attention and concern. Things like applying for, succeeding at obtaining, and then travelling for and writing up my Churchill Fellowship. A process that expanded the range of people who I was in touch with right across the globe. The Churchill Fellowship and a couple of projects happening for the Samuel Morris Foundation were setting up a great potential to significantly affect the numbers of children and families that are affected by non-fatal drowning. (This potential is obviously still there… just delayed)

This year, everything has been focused on Samuel and many other things have been allowed to slip by… I have not been talking to as many people, in fact the circle of contact with people has been incredibly narrow and limited. I have not been thinking about a whole range of issues that would normally concern me in a broad strategic or global perspective.

Of course it is perfectly legitimate and expected that my focus is on Samuel and the family, and I would not want it any other way.. but it was an interesting moment to have my attention drawn to the contrast.

The courage to continue….

I have mentioned before the issue of courage… The current situation continues to be full of uncertainty, and thoughts about where things are heading can still be confusing and there are still so many “what if” scenarios and issues…

However thinking about the contrast between last year and this year brought to mind a relevant quote.. by who other than Sir Winston Churchill (rather apt, seeing as how it
is as a result of his legacy that some of my opportunities to expand were provided)…

“Success is not final, failure is not fatal: It is the courage to continue that counts…”

Samuel keeps showing that courage.. so should we…. adapt and overcome!

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